The Importance of Patient and Public Education in Acute Ischemic Stroke

Efforts to change the perception of stroke from that of an inevitable and untreatable occurrence to that of a treatable medical
emergency fall into two categories. The first focus of change is to maximize the ability of the medical system to recognize
and appropriately treat stroke patients urgently. This approach has been described at length elsewhere in this monograph and
was used successfully to recruit patients in the recent NINDS t-PA Stroke Study. Patient recruitment in that trial was considered
a success. However, exclusion data from the trial indicate that of the more than 17,000 patients evaluated at an emergency
department (ED) within 24 hours of symptom onset, only 3.6% were eligible for treatment (1). Using a similar measurement,
the goal for emergency system reorganization could be to increase urgently treatable acute ischemic strokes to 10% of those
presenting within 24 hours of symptom onset.

The second and perhaps most challenging focus of change is to educate the general public to better utilize the health care
system in response to acute ischemic stroke symptoms. A review of the literature describing stroke presentation (Tables 1 and 2) demonstrates vividly that the majority of the general public does not seek health care immediately in response to stroke
symptoms. Many of the specific factors that cause delays in seeking emergency care will be discussed in the papers from the
Public Education Panel in this monograph. Identifying these factors and applying the principles of reaching large audiences
with an appropriate message represent the "work" of patient and public education professionals. A proposed goal for this second
focus would be to increase to 15-20% the rate of urgently treatable stroke patients seen in the ED (an additional 5-10% over
the increase projected with emergency system reorganization alone).

Some caution needs to be used in interpreting these targeted goals. The time-frame for evaluating the goals may be different
depending on the targeted strategy. Measuring the effects of emergency system change could probably begin as soon as possible.
This would allow for some collection of baseline data. Experts in community education, however, will argue that, although
patient behaviors can be changed, the process is slow. It would be appropriate to measure the effects of educational programs
3-5 years after they have been put into place. Another factor to be considered when establishing targeted goals and time-frames
for their evaluation is the possible future development of additional stroke therapies with broader time windows for treatment.

Using the number of treatment-eligible patients as a measure of success in education campaigns has already been done for other
diseases. Often the stroke experience is compared with earlier experience in treating acute myocardial infarction (AMI). The
goal of increasing to 20% the rate of treatable acute ischemic stroke patients presenting to hospitals (10% increase from
system reorganization and 10% from public/patient education) can be compared to current data from the National Registry for
Myocardial Infarction 2 (NRMI-2). In this database, covering the period from July 1995 to June 1996, 122,792 nontransferred
AMI patients in the United States were identified; 66% did not achieve acute reperfusion while 33% did achieve some acute
reperfusion (27% thrombolysis, 7% alternate interventions) (2). The differences between stroke and AMI are numerous and include
disease incidence, variables affecting symptom onset, treatment options available, and treatment time windows. Nonetheless,
the similarities of the populations at risk and recent experience with evolving therapy allow meaningful comparisons between
AMI and stroke.

The timing of system reorganization and patient and public education programs is itself somewhat controversial. Should these
two strategies be separated and implemented serially one at a time? If implemented serially, which of the two strategies should
be implemented first? Or perhaps they should be introduced nationally in parallel, allowing local factors and standards to
determine the course of implementation.

Scenarios in which the systems are changed via traditional, academically driven professional education prior to public expectation
unfortunately depend on widespread acceptance by clinicians of the need to change. Ultimately, such a process is dependent
on some overseeing body to determine when the system is ready to implement the second phase. Another problem with this approach,
which has been seen in clinical trial recruitment and, to some degree, in the evolution of cardiac treatment, is that teaching
new standards of care even with wide acceptance does not ensure that there will be actual changes in health care delivery
systems. A sufficient number of patients eligible to receive new treatments must seek care in order to develop and refine
new systems.

There are several potential problems with creating public expectation and demand before the treatment standard is fully established.
This situation can be driven by the "market." Hurried, haphazard placement of new protocols in conjunction with or just prior
to marketing of new services may occur. The nature and/or quality of care provided may vary markedly among medical facilities
within the same community. In today's competitive health care environment, cutting edge care can become just another marketing
strategy instead of a recognized scientifically driven advancement. In less competitive communities, a national or local public
education campaign alone would probably have little noticeable effect on acute stroke treatment. Changing behavior with public
education is a slow process.

Ultimately, the most acceptable timing would be the simultaneous introduction of new treatment standards and public education
programs to decrease the time from symptom onset to hospital arrival and treatment. Change is often painful, and recognizing
the need to change, if left solely to a traditional continuing education model, could be delayed for years. As a result, actual
change in patient care delivery would be further delayed. Public education would inject the additional pressure of consumer
demand and accelerate the process that each center must undergo to embrace and properly plan new systems for delivery of care.
During this difficult process, it is important to remember that the ultimate goal for health care professionals is to safely
improve the outcome for every patient cared for in our systems.

Previous educational programs for stroke have, in general, suffered from a lack of organization and motivation. In the not
so remote past, most public education focused on stroke prevention rather than on stroke treatment. Multiple prevention and
risk factor awareness resources were available but were often overlooked in the clinical setting in order to use valuable
patient contact time to focus on "treatable" diseases. Public education programs stemming from stroke clinical trials and
focusing on treatment have reported some success in increasing trial enrollment or decreasing delays in treatment (3). These
efforts were local. It is not known whether any benefit was sustained after the stroke trial or program was concluded.

Evaluating the public's knowledge of stroke has been attempted (4-6). Specific results of these efforts will be described
in subsequent discussions. It is safe to say that considerable educational efforts will be required to ensure a knowledgeable
public, as was the case for AMI. We hope that experiences from cardiac and other organized educational efforts will be useful
in helping us create an effective educational campaign for the public and for stroke patients.

Many stroke-focused researchers and health care providers believe that the process a stroke patient goes through when seeking
health care is different from the process used by patients with other diseases. The available studies for review are limited
in number and influenced by cultural differences and varying study methodologies. Despite this, important variables in the
treatment-seeking behaviors of stroke patients can be identified. One such example is the important role played by witnesses
or the first person contacted after the onset of stroke symptoms (7-10). However, a complete picture of the stroke patient's
decision-making does not yet exist.

Changing treatment-seeking behavior is one of the most difficult challenges facing patients and professionals responsible
for health education campaigns (11). Stroke may be an especially difficult challenge. Compared to AMI for example, stroke
presents many more variables that can prolong the delay in seeking medical care (12,13).

As in Madison Avenue mass marketing campaigns, the design, content, and execution of a public education campaign represents
the greatest actual dollar investment. The success of a project depends on identifying "the best messages, the right audience,
and the appropriate medium in which to convey the message." An acceptable balance between scientifically based messages about
stroke and what the public is capable of understanding needs to be identified. Factors that might motivate change in the population
at risk for stroke also need to be identified and evaluated. The benefits of national versus local campaigns or combinations
of both need to be further explored. But having answers to these questions is only half the equation. How stroke messages
will be coordinated among the various agencies that provide patient and public education and who will support this effort
with the necessary dollars for a successful campaign have yet to be decided.

In developing our strategies for patient and public education we might want to consider the sites where patients at risk for
stroke receive their health care. Since the majority of potential stroke patients are already receiving medical care (6),
one of the stroke education campaign targets could be to directly educate patients at risk who receive medical care at primary
provider offices and clinics. The motivational message might emphasize the risk for disability. The symptoms of stroke would
be taught to both patient and family and always in conjunction with the desired treatment-seeking behavior.

Once a patient has had a stroke there is a high risk that he or she will have another. A different level of stroke education
could be introduced in this situation. Again, direct contact with stroke patients and their families by a health care provider
in the hospital, ED, clinic, or primary care provider's office is needed to teach (and re-teach) the symptoms of stroke. Discussion
of a particular stroke patient's symptoms will enable the likely witnesses of any second stroke to better recognize neurological
change in the individual at risk. Why time is important in seeking health care for stroke should also be discussed. Finally,
potential treatment options, risks, and benefits need to be introduced to enable the stroke patient and his or her family
to make the best possible decisions should the need arise.

Programs like the one described above are needed today. As more time-dependent treatments for stroke emerge, all health care
professionals encountering patients at risk for stroke need to be ready and able to assist patients and families as well as
the public at large in making the best possible decisions and facilitating the best possible outcomes. Specific programs focused
on treatment-seeking behavior should be used in combination with stroke prevention programs that already exist. Well-designed
existing programs need not be discarded or changed, but rather should be incorporated in a master educational campaign so
that they can be used more widely. Much cooperation will be needed among interested groups that stand to gain from improved
stroke patient outcome. The resulting success of such a coordinated effort will have wide-ranging impact on both the human
and financial toll of stroke.